INTERNATIONAL DAY OF PERSONS WITH DISABILITIES 2018
especially in this post as it relates to those diagnosed with Dementia, Alzheimer's, and the other diseases associated with Dementia:
Alzheimer's, Vascular Dementia, Lewy Body Dementia, Parkinson's, Frontotemporal, Creutzfeldt-Jakob, Wernicke-Korsakoff, Normal Pressure Hydrocephalus, Huntington's Disease, Mixed Dementia, and Other Causes
These are some of my thoughts in relation to my friend Kate Swaffer's current post on the progress we are making in the world with regards to understanding, diagnosing, and supporting those with Dementia. CLICK HERE TO SEE KATE'S POST. Opens in a new window.
I always feel a little traitorous in making the kinds of comments which follow as I DO NOT want to undermine the good work going on of making things better for those diagnosed and for those who love those who have been diagnosed with Dementia. I do not want to ignore the progress that is being made. In my own experience, when Gregory (my 41 year life partner) was first diagnosed in 2003, the stigma of the diagnosis was still so strong and so little known about it.
But having lived through 12 years of Gregory and my journey with Dementia, most likely Alzheimer's, I cannot let go of what went into making the middle and end stages of the disease manageable, tolerable, safe from harm, as close to normal as we could get it, and the struggles we worked through. P.S. We did not SUFFER!!! Hate that idea! We worked very hard and our life was filled with love and life!
I always said that Gregory was not a VICTIM of Alzheimer's but rather a HERO! Recently I have been able to say that BOTH GREGORY AND I were not VICTIMS but rather HEROS! As in all things, it is better when there is more than one working together to deal with any life threat.
HOW WONDERFUL AND HOW MUCH WORK HAS GONE INTO: "The World Health Organisation" .... stating .... "Dementia is one of the major causes of disability and dependency among older people worldwide"(2018).
AMAZING AND SO MUCH PROGRESS THAT: "It also now defines dementia is a condition causing acquired cognitive disabilities."
ALSO SO TRUE THAT: "as dementia progresses, our disabilities are likely to become more obvious, although this seems to be the lens through which dementia is still being viewed (late stage)."
AND YES: "This is relevant, in light of the global campaigns to make our communities 'dementia friendly', as what we want has little to do with being friendly, and everything to do with inclusion, and therefore access, including access to adequate health care, and disability support including rehabilitation (cognitive and physical).
AND WHAT AN IMPROVEMENT TO QUALITY OF LIFE AS: "People with dementia have definitely become empowered, and are working together locally, nationally and globally to ensure dementia is not only listed on websites as a condition causing disabilities, it is a condition where we will, at the time of diagnosis, be provided with adequate disability assessment and support to maintain independence for as long as possible, not just assessment of our Activities of Daily Living (ADL's), and which will also include rehabilitation."
WHAT STILL SO GREATLY CONCERNS ME, HOWEVER: Is that Dementia is incurable and increasingly causes the acquired cognitive disabilities to get in the way of quality of life, including independence and safety and the ability to successfully function on a day to day basis.
WHAT BOTHERS ME STILL: is that the caregiver partner without the diagnosis is often discounted out of concern for what the caregiver partner with the diagnosis goes through. I do not believe one can win the "which is worse" prize in this contest. As we used to kiddingly say, "On a scale of horrible to horrible, it is terrible for both of us." But with love, understanding, respect, and educating oneself, one can persevere and prevail.
The joy outweighed the sorrow and the laughter outweighed the tears!
ALSO, I HAVE NOT COME TO GRIPS: in dealing with the "rights" of the person with Dementia. It seems to me that sometimes those rights must be forfeited (only, of course, if done with the person with Dementia's best interests always in mind.) A key factor here is that those rights must not be removed too soon or if they can be improved with compensation and support and definitely with trying to keep the person involved in those decisions if they are still able.
LATE STAGE DEMENTIA IS AN INEVITABILITY: and as a "world," on this World Day of Persons with Disabilities, we are doing still such a terrible job of making the Late Stage Dementia Journey as comfortable as possible for those diagnosed, as well as for those who love and care!
YES, WE NEED TO CONTINUE WORKING ON MAKING CHANGES ON THE STIGMA AND INAPPROPRIATE APPROACH TO DEALING WITH THE DISEASE IN THE EARLY AND MIDDLE STAGES: but we cannot assume that those changes will improve anything as it currently exists during the late stages. Therefore, I believe that hand in hand with discussing changes in the diagnosis early stages, at least a "nod" must be present to the difficulties and changes necessary during the late stages.
Family, friends, and many medical and social support services do an increasingly better job helping those diagnosed to keep their visibility and their independence; to accentuate what they are able to do and not the abilities that have been lost; to do so with understanding, love, and respect.
So maybe the best I can hope for is that if the BEGINNING GETS BETTER the END WILL BE MORE TOLERABLE AS WELL?